To gather up-to-date information about PHR development and implementation for this comprehensive literature review we conducted a review of the existing published and unpublished literature, gray literature, and various official government documents. Based on our findings from the literature and through discussions with ASPE and CMS we identified an initial group of key informants who are involved with and otherwise knowledgeable about PHR development efforts, product design, standards, and usability/ utility. We completed discussions with sixteen key informants (see Appendix B). Finally NORC submitted a draft version of the literature review to a fourteen-member expert panel and incorporated their comments into the document.

A complete listing of sources consulted for the literature review is provided in Appendix C. NORC obtained recommendations for relevant materials and information sources by seeking initial guidance from the ASPE Task Order Monitor and key contacts at ASPE, CMS, AHRQ, and other federal agencies and foundations. We also conducted broad searches using the following online resources:

Google

Google Scholar– A more specialized search engine that focuses on peer-reviewed and other academic literature.

Lexis Nexis– A search engine that primarily indexes proprietary content, including a range of public and trade periodicals.

AHRQ National Resource Center for Health IT Knowledge Library– An online comprehensive search engine compiled by NORC and its partners, containing articles and information on topics such as evaluation, economics, and management of information systems.

HIMSS– The online resources of the Health Information and Management Systems Society

The sixteen individuals who took part in the key informant interviews contributed a broadened perspective on how other organizations are currently sponsoring and delivering PHR functionality. Initial key informant interview participants were identified through the use of referrals from key Federal and other contacts. Subsequent interview subjects were identified by asking the initial participants to recommend other individuals who are known for their expertise on PHR development and implementation. Exhibit 1 summarizes information about the organizations represented in these discussions and specific topics addressed. A sample discussion guide is included in Appendix D.

NORC staff considered each of these three data sources in crafting the analysis presented in this document. Findings were synthesized and incorporated into the document through an iterative process in which NORC collected relevant data, and organized the information into broad categories. These categories were then mapped to the project’s research questions. A detailed outline of themes was developed and revised, ultimately taking the form of the chapters presented in this document. NORC staff outlined each chapter in detail, and revised chapter contents as the literature review and key informant discussions progressed.

Survey Disclaimer

According to the Paperwork Reduction Act of 1995, no persons are required to respond to a collection of information unless it displays a valid OMB control number. The valid OMB control number for this information collection is 0990-0379. The time required to complete this information collection is estimated to average 5 minutes per response, including the time to review instructions, search existing data resources, gather the data needed, and complete and review the information collection. If you have comments concerning the accuracy of the time estimate(s) or suggestions for improving this form, please write to: U.S. Department of Health & Human Services, OS/OCIO/PRA, 200 Independence Ave., S.W., Suite 336-E, Washington D.C. 20201, Attention: PRA Reports Clearance Officer.